3bmom

I am glad this area of Mass. is so proactive. They have authored two bills for insurance coverage for PANDAS kids for their state. This is truly awesome wether there is an outbreak this year or not. I am amazed at the parents ability to come together. Anybody with family or friends in the state can help get this passed. They also are accepting personal stories from our community. All the info is on the PANDAS Network. Sorry I would post it but am computer challenged. Can't imagine how good I would be if I studied computers for 9 years instead of the immune system!

When my father-in-law was in the hospital they used aromatherapy to stimulate appetite. Sorry I don't know which one. Also on another thread we were talking about how Zinc helps with Anorexia and Vitamin D may exacerbate some PANDAS kids along with certain probiotics and fish oil. Maybe cut back on supplements and re-add them one at a time.

This is a bit different but was suggested to me from my acupuncturist. Whenever my son gets a scratchy throat I give him a teaspoon of organic coconut oil. He lets it melt in his mouth, gargles and than spits it out. It is suppose to be antimicrobial. We have had a great winter so far. One cold but no exacerbations. We are however on prophylactic abx and antivirals.

Thanks, I am going to try some. I also read it is necessary for eliminating mercury from the body.

Rowingmom, If the bacteria likes glucosimine will a glucosimine supplement make it worse? I haven't looked into taking them because they have sulfur which is good for detoxing but I have horrible reactions to sulfa medication.

Could Lyme be causing inflammation at the site and with therapy moved it around to the central nervous system? Lyme can appear with neck or back injuries after aggravation. Rowingmom you gave me a clue for myself. I was on the floruquinoles last August and had horrible shoulder pain. I went to an acupuncturist and it changed the pain up my neck. It feels more like I hit it on cement and not a ruptured disc. Also some days it is mild and it felt better when I was on an antiviral for shingles. I thought tendonitis after what you said but I wonder if the medicine broke down cellular walls of something else. The good news is my brain isn't as foggy..What a trade off!

i wonder about IVIG too. In California we had a different strep strain with an increase in PANDAS so it may be a geographical virus. There are also supplements to support nerve regeneration but unless they get a full workup like we need with our kids, (which is difficult) it will be hard to get all the answers. Drs always want one factor when it is probably multiple factors. I compare it to a firing squad. You are so riddled with bullets you don't know which one did you in or who fired it. A PANDAS mom I know met a girl at a hockey game from Canada. She comes to the states because she lost her ability to walk and was in a wheelchair. An LLMD saved her and she is doing great. Hopefully someone will look for Lyme as an underlying factor before they contracted the virus.

I hope they get answers too and maybe it will bring together ALL pediatric Drs so they can compare notes and see we are loosing a generation of children to a myriad of health issues.

Dr T is speaking in regards to "Persistent Symptoms" at 9:00 EST

I just found an excerpt from Dr. James Greenblatt, who was mentioned before on this forum as an integrative psychiatrist. "Malnutrition exacerbates depression and eating disorder behaviors by depleting the brain and body of vital nutrients. These nutritional deficiencies can and do have profound effects on the brain. Several studies have shown that deficiencies of zinc, cholesterol, and B vitamins are found in patients with depression. People struggling with eating disorders may also have abnormal levels of zinc and other nutrients." I found out this weekend we have increased pesticides on our food by 300% therefore chelating these essential nutrients. What supplement do you use?

I went to a support group for woman with children that have health issues. They discussed that Round-UP and GMO's not only chelate magnesium creating deficiencies but also zinc and believe that zinc supports strong sperm and there may be a link to lower zinc and difficulty conceiving. Isn't low zinc implicated in Anorexia and OCD? What are your thoughts? Our Dr doesn't supplement. I understand he has seen benefits and harm just like some here have both positive and negative reactions. I am sure it needs to be based on your 23 and me but thought I would ask.

I agree! Met with an expert on Glyphosate over the weekend. Didn't know they use pesticides to speed drying times! Most important thing I learned in addition to chelation of Magnesium in our bodies it has a profound effect on chelating zinc. They believe this causes zinc deficiency in humans and is responsible for the difficulty in conceiving since zinc strengthens sperm. They question the drop in teenage pregnancies is more likely due to pesticides than abstinence. I thought I read somewhere, maybe here that low zinc may cause Anorexia and OCD. Any thoughts?

Also don't forget as you get rid of other infections, you can use food and supplements to heal the body, and as the body gets stronger it is able to squelch other viruses.

In the GMO agriculture field a world renown plant pathologist who is a retired 4 star colonel has been trying to inform the medical community he has found a lyme like pathogen that I think is part bacterial and part viral. He has never seen this before and is extremely alarmed. He is being ignored by the FDA here but taken vary seriously in other countries. You can U-tube Dr. Donald Huber and hear his lecture over in Hawaii.

I agree with Chemar. Emotional stresses no matter how small seem to influence our kids. Like a coin it is the other side of PANDAS. That being said years ago before PANDAS came into our lives my husband had severe cat allergies. We couldn't even have dinner at a family members home if they had a cat. He gave up gluten for heartburn issues and lost his cat allergy! We thought it bizarre until we entered world of the immune system. I think it all goes back to layers and which layer of inflammation is personally worse for you.

I do too! Just read an article on them them that it from an entero virus. I believe entero viruses are from a collapse of our innate immune system and HHV-6 is also an entero virus which we all know is implicated in PANDAS, Autism, and MS.

Here is an interview with Justine's Dad. He is violating the gag order in desperation to get her help. http://video.foxnews.com/v/3233807386001/father-on-losing-custody-of-daughter-over-medical-issues/#sp=show-clips

You mentioned his sinuses started to drain. Maybe there was strep in the sinuses that spread to his throat and activated more of the immune system response hence the rash and arthritis symptoms.

sf_mom, How are you detoxing him for black mold? The year my DS got sick we had heavy rains and later I found the stachy mold behind the wall where he would sit and play. We moved out, got rid of the mold and also got rid of Asthma but not the PANDAS. I have always wondered if that was our straw that broke the camels back.

Riffleshell, Thank you for the great info!!!! Looks like catch 22. Maybe it is similarthe mistake they are just learning about high cholesterol. The cholesterol is like a fire fighter being blamed for starting a fire because they are always present at fires. I am sure it goes back to your individual tapestry. My girlfriend has just battled both breast cancer and rectal cancer with no genetic markers but she does have very high Vitamin D.

A timely question for me! My DS vitamin D levels also are very low despite hours of outdoor activity in the California sun. I have learned that the chemicals in Round Up that is being sprayed on our food at high levels never done or tested before acts as a chelator of minerals, especially magnesium so it is difficult for our bodies to uptake Vitamin D. I haven't read yet, but will the above posts on autoimmune and Vitamin D because somewhere in all my research I think I read where some viruses utilize Vitamin D for food. That may explain why some have increases in exacerbations. Was going to order some today and have been procrastinating for months. Would love to know if it goes back to your individual genetics.

I am so sorry they are not supporting you. I think this is all so new, as in last 20 years since food became altered that Drs can't think out of the box or are even curious. The hospital didn't help us either, not even blood work to prove me wrong and it was the same hospital that 6 years earlier video taped him for learning purposes and were amazed that an antibiotic for an ear infection made severe OCD disappear in a week! I was lucky to have an earlier pediatrician put him on a steroid till I found his present Dr.. Valacyclovir isn't a potent drug and is used here widely for cold sores on the mouth, genital herpes, and shingles. I have always wondered about any relation to the chicken pox vaccine and HHV-6. If I was a Dr I wold be so curious just to see "What If". I agree with Rowingmom to get Buhners book. Also a post to asking what others have used for an anti-viral, dose, weight and reactions. I think grapefruit seed extract and oregonal are beneficial. I have recently met an alternative massage person who uses essential oils along the spine to absorb into the body. It is called Raindrop Therapy. Our skin is our biggest organ so the fact you have a rash present means the body is overloaded and trying to expel toxins, virus, bacteria etc. Another thought from a completely different angle. My DS second flare at age 9 was just severe tics to the point he stopped talking for 6 weeks. My Dr at the time did the wrong blood work and than told me I was beyond their scope, and savvy enough to figure it out. Out of desperation I took him to an OCD therapist and found out the majority of tics were actually compulsions. There was an irrational thought process behind them even though it didn't present to me like that and he wasn't able to articulate it. With her expertise he was changing his behavior patterns/tics and started talking quickly after. I would also go off of Dairy, we are ok with goat, gluten, soy and corn. They are all inflammatory and each layer you remove should get you some improvement. I send you hugs and hang in there.

All of these feelings are so true. Every morning my husband and I give a report on how our DS woke up and got ready for school. It is like the weather for the day, sunny, partly cloudy or a storm brewing. I have put some time limits on my research, read for pleasure and started walking everyday again to nurture myself and fill back up. I know I need to address gut issues and methylation. For now though I need a breather, I try to enjoy the good and spend time with him knowing that laughter also heals the immune system too. You are not alone. Hugs!

All very interesting since I have had 4 ruptured discs in my Neck and Drs have a hard time believing me when I tell them I didn't do anything to cause it. I did find relief with high amounts of fish oil. Maybe the Omega 3's we are all so deficient in brings down the inflammation. I have also read (info junkie too), that scoliosis can be caused by a viral infection. My non PANDAS and very athletic son got back problems at the same time as chronic fatigue. He didn't have the strep but his HHV-6 was 20x higher than normal. Makes you wonder.

Have you had luck with any dietary changes? Dairy, Gluten etc. I have a teenager and it did take a while but each little bit made him improve. Because his immune system is in an autoimmune state his Dr told him that consuming Dairy could give him type 1 diabetes. Dairy alone gave us a big improvement and that was right after hospitalization and no meds or supplements. If he will not do that I would fill the home with only organic, grass fed food. Expensive yes but not as much as having a PANDAS flare.